Last Thursday’s CurePSP webinar with Heather Cianci, a physical therapist who is an expert in movement disorders, was very good. We need more people like this in our communities!
Though the webinar was hosted by CurePSP, all of the disorders in our group will find useful information in the webinar.
Here are some key points from my perspective:
- Start an exercise program immediately.
- For fall prevention, consider gait and balance training, home modifications, acceptance that certain things cannot be done without assistance, and adaptations.
- How should the caregiver help someone walk? Often caregiver will stand to the side and put an arm around the back. Sometimes holding at the elbow is good enough. Sometimes holding hands is good enough. This should be practiced together, in front of a PT. If someone is less stable but isn’t ready for a walker, consider using a gait belt.
- As soon as falls or balance problems begin, have PT and OT assessments for “prehabilitation,” education and training. Learn new ways of transferring, walking (maybe with equipment), balance exercises, turning, bathroom safety, etc. If someone can’t remember these techniques, someone must be with the patient at all times. Later in the disease, the patient can’t move safely without falling. Even when someone is home-bound, all effort should be made to keep someone active.
- Generally, a 4-wheeled rolling walker that has seat and brakes works the best for PSP. Durable wheels that make turns (swivel).
- Examples of devices for getting out of a chair: chair risers (that attach to the bottom legs of a chair); firm cushion to raise the height of a seat; power chairs.
- Examples of devices for getting out of bed: bed rails; wedge pillows; electric beds.
- Two good websites for equipment are 1800wheelchair.com and sammonspreston.com.
The webinar was entirely questions and answers. My notes are below.
Heather Cianci, PT
Physical Therapy: Questions & Answers
Q: Falls play a very significant role in all of these disorders. I am interested in treatment strategies to assist with managements.
A: As soon as falls or balance problems begin, she recommends PT and OT assessments for “prehabilitation,” education and training. Learn new ways of transferring, walking (maybe with equipment), balance exercises, turning, bathroom safety, etc.
If someone can’t remember these techniques, someone must be with the patient at all times. Later in the disease, the patient can’t move safely without falling.
Even when someone is home-bound, all effort should be made to keep someone active.
Q: Even with limited exercise or mobility, I get short of breath to the point of not being able to speak in more than a whisper. How can I exercise and get any benefits if I can’t breathe?
A: You may need to see a pulmonologist. If you are cleared by this MD, you may need a supervised exercise program monitored by a respiratory therapist.
972-243-2272 Respiratory Care, www.aarc.org
Q: I am experiencing extreme muscular soreness in my left quad. Why? I am in pain. My internist provided no answers.
A: Hard to answer since I can’t conduct an assessment.
The quad plays a role in straightening the knee. See a PT for an assessment. If this is a pulled muscle (and that sounds like what it may be), heat and massage may help.
Q: I have pain above my eyes. Is this due to muscle problems? My left eye does not open all the way.
A: Without being able to do a formal assessment on you, I’m not able to give an exact answer.
See an ophthalmologist about the pain and the eye not opening. This may be a pulled muscle in the head!
The eye not opening may be due eye lid muscle weakness or blepharospasm. Treatments for blepharospasm: botox injections, eyelid crutches, or Lundie loops on the glasses.
Ptsosis can be a problem.
Q: When my husband sleeps over 12 hours, his balance is much better. Is there any relationship?
A: It makes sense that a well-rested person can handle balance challenges. There is no research supporting this.
There are lots of sleep problems in PSP.
Q: Could you address the differences in the visual disturbances between PSP, LBD, CBD, and/or FTD?
A: In LBD, a big problem is hallucinations. This may come into play when a patient tries to get up and talk to someone they are hallucinating about. Education of care partners that this is normal. Don’t try to talk the patient out of the hallucination. Is there a pattern to the hallucinations?
In FTD, there are no visual deficits. There are behavioral problems. There is disinhibition; the usual filter is not there. Many times these patients experience apathy.
In CBD, many patients suffer from visuo-spatial disturbances. In a study, CBD patients may not have seen the depth of something (so they missed a step) or they may think a dark spot on a rug is a hole in the floor.
In PSP, there is a marked problem with vision. Many play into the functional role of people moving around. First is the difficulty with vertical eye movements. Some can’t see down. Some can’t see up. Obviously if someone can’t look down, they can’t see the floor.
Second, often times the eyes are fixed at a given target. They experience square-wave jerks. Third, there can be a misalignment of the eyes. Fourth, there is a problem with cogwheel tracking of moving objects. And, they lose the quick phase of movement. They experience nystagmus. They have blepharospasm (involuntary closing of the eyes and inability to close the eyes). Many have a staring look or a look of surprise. Many have photophobia or intolerance of bright light. Some with PSP can’t stop blinking in bright light.
Q: What exercise or therapy has an effect on balance or eye movement in PSP patients?
A: Cris Zampieri gave the last webinar. There are exercises to help with this. Eye movement exercises and balance exercises did better with their mobility than those who did balance exercises alone. (Zampieri has published two studies.)
There was also a case report on one mixed PSP/CBD patient. Treadmill study. Improvement demonstrated.
Another case report on body-weight supported treadmill training. Improvement demonstrated.
Unanswered questions: when do we start these exercises? How do we change the exercises?
Q: Is incontinence a symptom of PSP?
A: Yes. Seen more in the later stages.
Q: Is it worth focusing on balance and eye gaze when the patient can no longer stand or straighten his head to see?
A: Always important to continue an exercise program, regardless of the stage of disease. Exercises can be done in bed, seated, standing while holding on to a chair, etc. Exercise makes us feel better.
Q: Is there any type of eyeglass lens that will help to focus things that are below the fixed eyeball?
A: Consider prisms. Different prisms are needed for different tasks (eg, reading vs. watching TV). Bring things up to the level of the eyes (gaze level).
Q: Is there anything that can be done to prevent nystagmus?
A: As far as I know, there isn’t anything that can be done.
Q: My mother is dragging her leg. Any recommendations on strengthening?
A: Without doing an actual assessment, it’s not possible for me to say what the exact cause of the leg dragging is, or the best approach. She may need an assistance device. She may need to be taught strategies to take a larger step and land on her heal.
Q: Can anything be done to slow the progression of eye changes?
A: Nothing can be done to slow down eye changes. You might consider patching one eye.
Q: I’ve had PSP for the last 6 years, and have fallen over 1200 times. Physical therapy has been discontinued.
A: If you have a medical reason for physical therapy, it should be covered. If you are not reaching your goals, insurance may not pay.
Look for a fitness class or a fitness trainer. Go to a local gym.
Maybe you need home modifications, more assistance in the home, and a scooter or wheelchair. This is dangerous! The falls must be prevented!
Q: What is effective for treatment in early/mid stage? Should we focus on vision training, balance, neck mobility? What can we do to prevent falls — compensation vs. rehab?
A: Start an exercise program immediately.
Fall prevention: gait and balance training, home modifications, acceptance that certain things cannot be done without assistance, and adaptations.
Q: What is the best walker for PSP patients?
A: Generally, a 4-wheeled rolling walker that has seat and brakes works the best. Durable wheels that make turns (swivel).
We like to use 1800wheelchair.com. 800-320-7140 phone. Get a catalog.
PSP patients should NOT use an aluminum, straight, 2-small-wheeled walker. You can ask for a replacement for swivel wheels for this walker.
Q: Is it a good idea to put weights on the front of the walker?
A: This is done to prevent backward falls. That’s the theory. If the person doesn’t know how to properly use the device, this walker won’t work.
It’s best to have a PT assess your walking and suggest the best device.
Q: What is the best device for getting up from a sitting or lying position?
A: There are many good devices. It’s best to have a PT or OT try the devices with you to find the right one.
Examples of devices for getting out of a chair: chair risers (that attach to the bottom legs of a chair); firm cushion to raise the height of a seat; power chairs
Examples of devices for getting out of bed: bed rails; wedge pillows; electric beds
Q: While walking, the feet become frozen. How do you help the PSP patient “unfreeze”?
A: These techniques come from the PD world. Don’t fight the freeze.
1- stop moving and steady yourself
2- take a breath and stand tall
3- make sure the weight is on both feet equally. (Often with a freeze, the weight is imbalanced.)
Focus on walking; do that activity well.
Don’t pull on or push someone who is frozen. Talk them through it. Have them shift their weight. Or count 1-2-3 and take a big step. Or step over something on the ground.
Lots of auditory and visual cues can help. Her Center has a handout on this.
Q: Is PT beneficial for all stages?
Q: Are reflexology and massage beneficial?
A: Many patients do get temporary relief from pain and stiffness from massage. There’s no research to support or refute reflexology or massage.
Q: Why does PSP cause one to run into walls and doorways, even when being guided?
A: Lots of different things going on with PSP. Loss of balance. Visual-perceptual problem. Loss of ability to scan the environment (anticipatory scanning). May have double vision. May be from mental confusion.
Q: During the Zampieri webinar, did she say that they are running tests with rats who have PSP?
A: No, these studies were done on rats with chemically-induced Parkinson’s Disease.
Q: Did these studies slow the progression of PD? Does this apply to PD?
A: Different exercises gave different results in the rats’ brains. In some, the rats were protected from developing PD. Reduction in symptoms and cell death before the rats were given the PD. After the rats were given PD, fewer dopamine cells died.
PD – loss of cells in SN that produce dopamine
PSP – weaking of muscles that are controlled by nerve cells that are controlled in the brainstem; this results from tau accumulation in the SN
The medications that treat PD don’t help with PSP. We don’t know if the effects on the brain of those with PD will be the same on those with PSP.
But it doesn’t hurt to exercise. Any exercise can be helpful, when done correctly.
Q: My wife cannot walk by herself. She cannot push a wheelchair by herself. What PT can I do?
A: You already have a great exercise program established. Without evaluating her, I can’t give specific exercises.
Practice techniques to make the transfers easier to both of you.
Keep working on both cardio and strength training.
Q: Recent news on PD bikers. Does this apply to PSP?
A: We don’t know.
Q: What is prehabilitation?
A: When first diagnosed, ask the MD for a referral to PT and OT. Don’t wait for balance problems.
Q: Should and can an MSA patient with OH still benefit from PT and what should they be doing?
A: Absolutely. OH is a sudden drop in BP when people go from a lying position to a seated position or a seated position to standing. PT can really help with this. PT can teach you exercises to pump the blood better. PT can talk about compression stockings. PT can help you learn safe ways of moving.
Q: What about neck mobility?
A: It depends on the situation. In PSP, patients can have dystonia so it can drop the neck forward. Consider botox.
In some, it’s the opposite with patients looking up at the ceiling all the time. Botox might help with the retrocollis.
Stretch what is tight and strengthen what is weak.
Q: What specific knowledge about PSP, if any, do you think a PT needs to have to do a stellar job at providing PT to a PSP patient?
A: Great question! In school, we might’ve received two minutes of training on atypical parkinsonism disorders. This is not necessarily a bad thing. Find a PT who is willing to do some research. A PT is going to test you — walking, your balance, up and down stairs. PTs can’t treat the deficit in the brain but they can treat the functional issues. Are you falling backwards?
We are starting to have people who are specially-trained in PD and atypicals. See wemove.org for PTs and OTs.
Q: Problem of restless legs when sleeping.
A: There is no good PT for this problem.
Q: Are there any illustrated books available that show the exercises and assistance techniques specific to PSP for the caregiver?
A: Fabulous question! We are currently working on getting The Guide re-done. It will have pictures. We are also intending to make videos that are downloadable.
There are lots of exercises on the web. Check with your MD, PT, or OT to be sure they’re safe.
Q: Is there a catalogue for equipment?
A: Two good ones: 1800wheelchair.com, sammonspreston.com
Any PT place should have catalogues of equipment.
Q: How do we locate PTs throughout the US or other countries?
A: Usually a movement disorder specialist is linked up with specialized therapists. If you are not with an MDS, check out wemove.org, lsvtglobal.com (LSVT PT/OT or LSVT ST…they are trained in PD and will know some about the atypicals).
In the tri-state area (PA, MD, NJ plus DE), she has recommendations.
European Association Parkinson’s Disease Physio Therapists
Q: Are ankle or foot weights beneficial or a hindrance for PSP patients?
A: For balance, this is not helpful. To strengthen muscles, this is helpful. Not a great idea to put them on and walk with them.
Q: How should the caregiver help someone walk?
A: Often caregiver will stand to the side and put an arm around the back. Sometimes holding at the elbow is good enough. Sometimes holding hands is good enough. This should be practiced together, in front of a PT.
If someone is less stable but isn’t ready for a walker, consider using a gait belt.
Q: What are some ways to make the home more safe?
A: Big topic! You can actually go room through room. An OT or CAPS certified aging in-place specialist) can evaluate the home.
Q: Diagnosis of PSP. The dementia seems to be causing the patient to exclaim they have only a balance problem and not PSP. How does one overcome the symptoms to convince a patient they have the disease?
A: Schedule another appointment with the diagnosing neurologist or one of the team members. Ask for another appointment with the patient and care partner for the purposes of medication. Seek help also from a social worker, counselor, or cognitive behavioral therapist for the patient.
This is a clinical diagnosis. Best to find a movement disorder specialist.
Q: Are there any new methods for treating MSA-C?
A: Nothing new in the PT realm for MSA-C.
There is a study ongoing at UPenn for Azilect in MSA-P. See pdtrials.org to learn if the study is happening near you.
There is a 2008 study comparing the cognition of those with MSA-P and MSA-C. Those with MSA-C have less severe cognitive dysfunction than MSA-P.
Q: Can you give information about support groups or volunteers that could go in and help people all over the world?
A: CurePSP, psp.org
Facebook page “Miracles for MSA”
MSA National Support Group, shy-drager.org
Find volunteers through:
* local church or synagogue
* universities with PT, OT, and ST programs
* local clubs (eg, Rotary, Kiwanis)
Medical Education Advisory Board of CurePSP is putting together a series of pamphlets on PSP, CBD, and MSA (three separate booklets). Information for PTs, OTs, and STs. These will be available online soon (May).